This Is MS Multiple Sclerosis Community: Knowledge & Support

I have a question for anyone that would like to respond. I have had MS for the past 5 years 3 of which I have been taking Copaxone. I was okay for the first six months and then I started having the severe reaction with chest tightness and shortness of breath. This reaction has happened to me at least once every 2-3 months while I have been on this drug. Now my chest aches on and off all the time. I also have had substantial hair loss since starting this drug. I have talked with my doctor about these things and he really cannot confirm or deny that it is the drug that causes this. He tells me I can just stop taking it if I want to. I feel like I am backed into a corner. There are not that many drugs to choose from and this drug is suppose to have the least amount of side effects. Any advice?

Hi

I recently just went OFF copaxone in the last few weeks becuase of side effects myself...since starting Copaxone over 2 years ago, I have developed lipo-atrophy, but worse...gained 70 lbs and began swelling up every day! Literally swelling up with fluid to the point of feeling like I was about to burst! When I researched this on the 'net, the "rare" side effects for Copaxone included weight gain and swelling of limbs. Huh...no one ever told me about that before!

Anyway...I figured I had reached the point of diminishing returns...and was glad to go off it. My doctors want me to stay off all drug for 6 months or so to allow time for my body to "calm down" and see if I can shed some weight...so far 7 lbs in 2 weeks...not bad....I am feeling SOOOO much better now!

So...the best advice I could give you is...trust your instincts...and look at the pros vs cons...

Carolyne

hi alicia,

i take cop since 1,5 years now and "my" side effect are not as terrible as carolyn describes hers. i got reaction at the injection site (as lots of people report), and once, i got a so-called flush, that was really frightening. but still, i can get along with these effects, as long as i dont get a relapse (and I didn't since i take cop).

best wishes, antje.

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"Anything essential is invisible to the eye.” Antoine de Saint Exupery, The Little Prince

Hello Alicia,

I've been taking Copaxone for 1.5 years and have experienced problems at the injection site only.
At 48, I have been diagnosed for 2 and a quarter years and have put on at least a stone in that time, but I believe that this was because I was eating the same amount as I used to when I was more mobile. The weight is starting to go now that I'm cutting out all the sweets, desserts, chips etc. - as well as exercising the bits that I can still move!

I still look on the copaxone as something to keep me going until there is something on the market that will actually repair the damage done by MS.

There are a number of things being researched and even being trialled at the moment (maybe this Aimspro) that are giving me hope that they are getting closer to the treatment to repair the damage.
Hazel.

I'm fairly new to the medications of MS, having had it for at least 6 years now, undiagnosed for 5 of those years and willfully resisting going on meds for 1 of those 6 years. Today my neurologist tells me "Time to start meds". I was told that I have relapsing-remitting MS, which I figured to be the case anyways and have managed most of the symptoms. One thing I haven't been able to cope with, is the fatigue, which is absoluetly crushing at times. I've had to reduce my hours at work to 4 days a week from 5 but even with that I find myself coming home from work exhausted (I have a desk job in health care), in bed by 6:30 and sleeping 10 - 12 hours a night and then spending most of the three days on the weekend resting. I'm supposed to start on Copaxone and just about lost all sense of thought when I was told it's $61.41 per day. I'm not sure what it costs in the US, but I figure someone is making some serious money off of this in Canada and I sure hope that it's going to be worth it. Apart from the fatigue, I think I have a reasonable quality of life at present, hope the Copaxone doesn't make it worse.

I have been on C for 2 years, 3 months. After being on it for a year, I started LDN in conjunction with Copaxone. 3 months after starting the LDN, I started developing hives/sores on my legs. No specific pattern, they would come out one at time or several at a time. Mostly on the leg area. I saw a dermatologist who told me this was a reaction to one of the meds I was taking, biopsied the sore and came back inconclusive. My neuro told me it couldn't be from the copaxone because I was taking it for a year before these symptoms started. On the LDN boards, someone suggested changing fillers. That is my next step, however I still feel it is the copaxone. Has anyone experienced anything like this from Copaxone? I would have to stop taking the copaxone to see if it is that but I am not willing to do so.

hello The PIR of copaxone is horrible I have been on it on and off for a few years and this last time back on for 5 months ..the first PIR was so scary for me and the family, severe racing heartbeat, flushing , shortness of breath , chest pain, severe back and upper leg pain, nausea,vomiting followed by extreme shaking uncontrollably and then feeling so hot and sweaty...this went on for approx 5 hours in total ..I was totally wiped out for days after...I rang the help line next working day and the nurse was wonderful. My doctor said to go back on it which I did reluctantly...and was told probably won't happen again and if it did wont be as severe !! It did and yes it wasn't as bad but it was still awful and I am not going back on it . I sympathise with you , it is a personal choice which is made harder by thinking we should be taking something but for me it is also about quality, this reaction coupled with the local side effects is too much for me so hopefully something else will come on the market for us

I have been on Copaxone for over seven years now with no side effects. I know everyone is different, but just wanted to put in a good word for it.

I was on Copaxone for 2 1/2 years but just recently had to stop due to a horrible out break of hives. I have been off Copaxone now for a week but still have the hives. I am miserable. I called the people at Shared Solutions and they said it is a side effect of the Copaxone and to stop treatment. My doctor now wants me to try the super new Aubagio drug. I am frightened out of my wits at the side effects that drugs has, one of which is hives and Steven's Johnson Syndrom not to mention liver damage and flu like symptoms. I am beginning to think that no treatment may be best for me. I know I can not begin a new treatment until my body has recovered from these hives which I understand can take weeks, months or years. Does anyone think that the treatments could be killing us as fast as the disease? Has anyone else had hives? If so what did you do to get rid of them. I'm going crazy!

Welcome to ThisIsMS, farmgirl. I used Copaxone for a very much shorter period than you. I did not have hives, but other unbearable side effects.

I can understand your fear of the side effects of these drugs; new drugs like Aubagio are especially scary because they have been on the market for such a short time and serious side effects seem to come to light after they have been on the market for a while.

Personally, I DO think that the current treatments could be worse for us than not using anything at all. When the cause of MS is unknown, how can any effective medication be created? I do not use any of the currently approved MS drugs.

Maybe a very clean diet – no sugar, no caffeine, etc. – would help your liver to clear the hives? Maybe drinking lots of lemon water would flush the offending substance out of your body? All the best to you.

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My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"

Thank you Lyndacarol for your comment. It think it helps to know someone else feels kind of like I do. I have to agree. I am going to eat a healthy diet, exercise and strength train and try to get my immune system back to some sort of normal if that is possible. Ridding my body of these hives is my first priority before I consider any medication ever again. I think my MS will have to get much worse before I go back on medication.

Hi farmgirl
I have been on Copaxone since almost two years without any bad reactions. Only the skin-site ones for a short time. Have not gained in weight. Did make a small change in diet (from hard cheese like Cheddar/Jack cheese to soft cheese like Camembert) and lost perhaps 4.5 to 5 Kg over one year.
(I found out that the fat content of hard cheese was nearly double that of soft cheese).

Hi all, i'm new on this site. I was on Betaferon at first, then Copaxone. Found both drugs made my hair thin-out and made me feel like shit. Decided neither of them were doing anything for me so now I don't take anything and I've gone on Wheldons Anti-biotic CAP. You've got to be extremely lucky for the traditional MS drugs to work for you.
I was diagnosed RRMS in 2007, pretty sure i'm progressive now. Sure I've had MS since my teens. I'm 38 yrs age. Married with a 16 yr old son.

I had very similar symptoms from day 1-Day 6 of taking the drug, with increasing severity of the symptoms as each day passed. I saw my cardiologist, and he was concerned that this drug, which he was NOT familiar with, could elicit such symptoms. My Neuro felt it was a rare effect of Copaxone, and perhaps it was NOT the best choice for me. He said that 'if I decided to re-challenge with Copaxone, I should do it at 1/4 dose for an extended period, before going to 1/2 dose, and so on...but, I would have to know taht I was taking it 'off label' and I was taking it 'at my own risk' knowing that this is a RARE SIDE EFFECT, and therefore my cardiac safety was unsure...

I DID NOT RECHALLENGE WITH COPAXONE! and I would not want any of us to take anything that caused such an adverse reaction in our bodies main organs.

It is so discouraging, trying to find a med. that works, and one that is not so frightening in it's side effects....